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Probably going to start remicade..

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xrayzerase

Guest
probably going to start remicade..

hi..i saw my dr yest--he took blood and did this tb shot/test (i guess this is typical if maybe going to start remicade)
first though: getting a ct scan-small bowel and upper gi series. barium and contrast.yuck. better than colonoscopy prep thou...
if i have no blocks..he then is going to give me the pill cam-which as everyone knows-you swallow and it records onto that monitor you wear outside on belt--and then it passes through stool (if no blocks ..but.at least the ct scan will check for those first)
these test may help show if the crohn's is in area near esophugus..or something..that the endoscope didnt get to--(i know there is another scope for pancreas etc--but he doesnt think it is my pancreas--but does want to check the whole gi system...so-scan/the pill cam.
he mentioned 6 mp and aza--and saw me react in a not happy way. so-then he mentioned remicade. he said the 6mp or aza are easier--just pill/s---but-for some reason remicade sounds less scary. (less side effects)-i think..whta..6mp is a chemo thing? and aza is often used after some organ transplants (?) still have a lot of reading to do. what acts better for what purpose/s..etc. i mean-it seem i am in a place where i can choose remicade over 6mp or aza...so--does that mean they ..(?) not sure what it all means. i wont start til i get tests done -and also-need to finish the entocort (he added 4 more weeks the the first 4 weeks--but i guess 8 weeks is the usual for entocort. (3 pills a day)
he seems pretty certain that no matter what the tests show--i'll be starting on something new soon--most like remicade. he also mentioned a new med is almost approved..humira (?) something similar to remicade...but-it is taken in injections which you self-administer. so..a lot to learn-ask about..
has anyone here been in a postition where it was ok to "choose" whether to use 6mp/aza/or remicade? if so...how did you come to the choice. is one safer than the other/s? i know they all are more intense meds-and long term-and lower resistance..but..oh..i dont know..need to read a lot more obviously...
if taking remicade-he said first 6 weeks (a few times? for infusions-2 hours each) and then 2 hour infusion every 8 weeks. but-that i'd still have to take the 8 pentasa :(
at least he knows how i feel about the pred...and so-unless i REALLY need it--i dont want it! that med scares me the most of all of them...
andrea
 
X

xrayzerase

Guest
xrayzerase said:
hi..i saw my dr yest--he took blood and did this tb shot/test (i guess this is typical if maybe going to start remicade)
first though: getting a ct scan-small bowel and upper gi series. barium and contrast.yuck. better than colonoscopy prep thou...
if i have no blocks..he then is going to give me the pill cam-which as everyone knows-you swallow and it records onto that monitor you wear outside on belt--and then it passes through stool (if no blocks ..but.at least the ct scan will check for those first)
these test may help show if the crohn's is in area near esophugus..or something..that the endoscope didnt get to--(i know there is another scope for pancreas etc--but he doesnt think it is my pancreas--but does want to check the whole gi system...so-scan/the pill cam.
he mentioned 6 mp and aza--and saw me react in a not happy way. so-then he mentioned remicade. he said the 6mp or aza are easier--just pill/s---but-for some reason remicade sounds less scary. (less side effects)-i think..whta..6mp is a chemo thing? and aza is often used after some organ transplants (?) still have a lot of reading to do. what acts better for what purpose/s..etc. i mean-it seem i am in a place where i can choose remicade over 6mp or aza...so--does that mean they ..(?) not sure what it all means. i wont start til i get tests done -and also-need to finish the entocort (he added 4 more weeks the the first 4 weeks--but i guess 8 weeks is the usual for entocort. (3 pills a day)
he seems pretty certain that no matter what the tests show--i'll be starting on something new soon--most like remicade. he also mentioned a new med is almost approved..humira (?) something similar to remicade...but-it is taken in injections which you self-administer. so..a lot to learn-ask about..
has anyone here been in a postition where it was ok to "choose" whether to use 6mp/aza/or remicade? if so...how did you come to the choice. is one safer than the other/s? i know they all are more intense meds-and long term-and lower resistance..but..oh..i dont know..need to read a lot more obviously...
if taking remicade-he said first 6 weeks (a few times? for infusions-2 hours each) and then 2 hour infusion every 8 weeks. but-that i'd still have to take the 8 pentasa :(
at least he knows how i feel about the pred...and so-unless i REALLY need it--i dont want it! that med scares me the most of all of them...
oh: taking the aciphex 2x a day now instead of 1--and also 1-2 adivan (.5 mg) a day..or-if needed for very bad burning and ab cramps-til flare is over-or til on remicade-or something...
andrea
Click to expand...
oh..ps:
cara: thanks for info on the mangosteen juice--i found it at whole foods-and got 2 large bottles--i will try it later today :)
and also am getting the calcium/d that daniel told me about..
so..onwards and upwards.....
ohh..sorry about this copying out twice..usually if i edit-i don't double it..just..sorry about that ...
 
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Skinsfan1229

Guest
You can take immuno-moddulators in pill and injection form.

Taking remicade plus an immunomodulator such as 6mp together has shown to actually work better then using one seperatly.

6mp, imuran, methotrexate they suppress your whole immune system....Remicade only suppresses your TNF cells, tumor necrosis factor, it has to do with only inflammation.
 
X

xrayzerase

Guest
oh...wow..ok. thanks.
this can be pretty confusing at first....
 
mikeyarmo

mikeyarmo

Co-Founder
I was on Azathioprine (Imuran is the brand name) and while I did not find it helpful to me, it was not "scary" to be on. It was used originally to ensure organ transplant patients did not reject the new organ, but has shown to be beneficial in CD (and UC?) as well.

Remicade has also been shown to work, but after a while you become immune to it, or the antibodies your body makes against it (which means it stops working) occur faster, making each infusion achieve remission for a longer period.

Immunomodulators along with Remicaide has shown positive results, so do not be afraid to take both.

Good luck and there is never a wrong decision. How are you supposed to predict the future or what will work best? (hint: even the doctors are never 100% sure)
 
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Skinsfan1229

Guest
Actually its more likely to build anti-bodies after stopping Remicade for a year or more, and then starting again.

Has anyone else read that? This is what my doctor says at the university.

He also said that to combat this...that when they give remicade to "repeat" users that have stopped they give them 50mg the morning before night before and morning off prednisone so 150mg all together, a tylenol, an aspirin, and a benedryl. Each one being used to combat a different reaction.
 
V

Valentina

Guest
Skinsfan1229 said:
Actually its more likely to build anti-bodies after stopping Remicade for a year or more, and then starting again.
Click to expand...
my remicade nurse said you can build up antibodies after 10-12 weeks or sooner, thats why they make me get it every eight weeks even though Im in remission and I thought I could go longer between treatments. makes me a bit nervous to tell the truth. (that it might not work for a very long time, seems like a delicate timeline Im living on)
Im also on methotrexate to prevent the antibodies. I was also getting IV steroids at the same time as my infussions for the same reason, but the last two infussions I refused them (not worth it to me to live like a paranoid crybaby for 2 weeks every time I get them) my DR is looking into giving me something else instead. seems like a bit of overkill to me if Im also talking mtx, and I know some people who are on nothing, and no pre-meds at all (benadryl, tylenol, steroids).
Jonny also gets remicade.. when they can remember to book him an appointment. some times its 3 or 4 months for him between treatments.. no pre-meds or anything else except aza. a bit worrying that my DRs treat it like a timb bomb, and his dont seem to be concerned in the least.

anyhoo. lol, sorry for going on and on.. good luck if you decide to go with remicade. its given me my life back, and I cant imagine where I would be without it :) I hope you get the same results.
 
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Skinsfan1229

Guest
Thats not a good idea to skip treatments. Its known for the drugs to work better when used together, methotrexate and remicade.

Its more likely to build anti-bodies when stopping for a year or more, I'll try to find an article or a website saying this, but it might take me a while.

Remicade works by entering the blood stream and attacking the TNF-A cells, which cause inflammation. (Tumor Necrosis Factor Alpha). It works by getting to the tnf-a cells before they reach the digestive tract. You can build anti-bodies in the same way you get a flu shot...you get a flu shot of a dead or partially alive "flu" and it helps you build antibodies.
 
F

flying4frogs

Guest
My specialist told me that you can build up anti-bodies in 8-12 weeks. (And regardless of the hydrocortisone, benidryl, etc some people do in 1 - 2 treatments)

But if you miss your Remicade treatments, your chances of antibody buildup are greatly increased!!!

I have been on remicade/methotrexate for the last year and it has made it so I live a almost normal life. (Still tired most days but I can live with that)

Flying Frog (aka Nelson)
 
GNC Crohn's Man

GNC Crohn's Man

Vita-Man
WATCH OUT FOR THE PILL CAM!!!!!!!!!!!! If you have any blockages it may get stuck and they may have to have surgery to remove it... My advise stay away from pills that get stuck in your intestines....

Fluids can cause blockage barium can cause blockage but they are a lot easier to remove then a pill that can get stuck in your intestines....

Brave the bad..... It sucks... Been through it all as far as the tests go...

Never will EVER EVER EVER have a pill cam though.....


As far as remicade the reason you might devolep antibody against it is because it is 1/4 rat protien.... But if you take the bendryl and the tylenol before the treatment starts you shouldn't have an allergic reaction.....

Again you should be getting treatments every 8 weeks...

Once you start you NEVER NEVER NEVER NEVER NEVER NEVER stop...

Because if you stop you may never be able to start back taking the meds...

And you may get sick just as soon as you stop after they have sworn to you up and down that you are in remission this isn't coming back BOOM you stop remicade guess what 3 months later your flaring again....

Remember remicade comes with a price.... You have to get a innumonpha shot sometime.... Because if you ever do get innumonpha you will be in hell because remicade cripples one of your bodies best defenses agaisnt it.... Also you have to get a tb skin test every year or so... If you get tb and if it gets to stage what 2 or 3 you die... Simple as that... Good thing we live in america though.... Not many cases of TB...

Also it increases your risk of lymphoma.... By about 4x.... So start taking your antioxidents their your friend because just about everything that fights crohn's weakens the bodies ability to fight cancer...
 
X

xrayzerase

Guest
yeah..i am beginning to wonder if i should do this pill cam...it sounds so cool-but..definitely dont want to risk it getting stuck and having to have surgery to get it out.
well--barium tests are next week..so..i guess go from there..
i wonder if humira has as many risks as remicade...in the sense of antibody trouble thing if stopping the med...(?)
i wonder where things are at with humira being approved for crohn's...
while it seems the remicade/and additional meds to go along-like 6mp/aza/mtx or any of thsoe..i know they may help a lot..but..lots of considerations to take into hand too..(though..maybe -in the end..my dr will decide for me anyway...) as long as i can avoid pred...and get off entocort w/o getting sicker..
it is helpful to read about how others do on remicade and/or immunomodulators -and that they seem to be able to get back to normal in many ways-which-right now-i am thinking it is all worth it.
i guess right now my biggest worry is the thing that once you start remicade-it is hard to stop-or-whatever--that almost makes me more nervous than the risks of lymphoma or whatever else...
ps:
has anyone heard of curcumin as a "natural" anti-tnf--it seems to work on various inflammation troubles--and there is some research going on with it for some cancers..and for crohns--but..not sure. not enough info and research..but..sounds interesting in general. someone is sending me a paper of research done at mdanderson.
i know-remicade-etc is most likely--but cant hurt to look all over at stuff-especially before starting the remicade..or whatever...
 
mikeyarmo

mikeyarmo

Co-Founder
humira is also said to me a fully natural anti-tpn. They seem to work well, but like Remicade they are new so long-term data is not out, and experimenting with dosages is often done.

Always ask a doctor about these drugs, as they may be available for you, or you may be able to become part of a clinical study that they know about. They may also read a medical journal that has more information than we do about some drugs and medications that are being developed.
 
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Skinsfan1229

Guest
I agree with GNC crohns man on the not stopping, I think its preferabbly better to not stop taking remicade once you start. Its not logical therefore to take 2 or 4 treatments to treat something like a fistula, if remicade is goingg to be out of the question for you for now on.

There are pre-meds you can take to prevent allergic reactions from building the anti-bodies.

Humira has no rat protien, which I eblieve is either rat pancreas or liver? its all human which is why I believe less peopel have reactions. Humira is scheduled to be approved by the end of 2007 for crohns, I usedd to have a list of when the meds woudl be approved but I cant find it at the moment.
 
Starbelly

Starbelly

I was scared to take the remicade too. My doctor suggested it in March, but I declined... big mistake. Taking it now along with 6 mp. And it's working thanks God. Not going to get into a big long discussion over the ramifications right now, but basically I will take being healthy now, even for a short time, and risk the chance of getting something else from the drugs I'm taking later. I'm not worried about the length of time I'm on this Earth, but the quality of time I spend. For the last 10 years I thought differently. I kind of just managed the disease, and have been getting by... trying to work hard when I can, and become financially independent and get my ducks all in a row. But, when you get really sick, none of that matters. If you don't have your health then you have nothing. ANd now my goal is to be totally healthy, even if it's short lived, because I have not been totally healthy my entire adult life. (21 to 32) I realized my lifehas been controlled by this disease... well no longer. And I will take as much Remicade as I can put in my veins if it does the trick... and take a long, well deserved vacation and travel, travel, travel!:biggrin:
 
G

Georg

Guest
I am sitting here getting Remicade right now as I type this. I get Remicade every 6 weeks,Methotrexate every week, 125MG 6MP, Nexium, Asacol 4 Pills 3X day, 40 Mgs Prednisone, and just got done with Flagyl, an antibiotic which has been known to help Crohn's, and Hydrocodone for pain.

If you have Crohn's, you should get on 6MP AND Remicade. Because my doctor swears by the 6MP after 3-6 months will keep you in remission if you can get into remission with Remicade or anything else. This is my 4th Remicade infussion and I've heard people say it's taken up to a year to see major improvements. I have high hopes, because I've been on 6MP for over 3 months now, and this is my 4th Remicade and I got my first shot of Methotrexate a few days ago, so it should all be coming together now to make me well.

Good luck,
Georg
 
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Skinsfan1229

Guest
I saw major improvements with remicade within hours of my first infusions.

Its best to use immuno-modulators with remicade.

Methotrexate and 6mp together is very dangerous, I wonder why your using two drugs that do the same thing, it would be like taking entecort and prednisone.

6mp does not get everyone in remission. It suppressed my bone marrow so bad that i was immune-compromised and had to be isolated.

DONT BE SCARED OF REMICADE! it only blocks inflammation cells, why be scared of something that is going to KEEP YOU FROM GETTING SICK!. its more realistic to be scared of an immuno-modulator that suppresses your entire immune system.

http://www.ccfa.org/info/treatment/immunomodulators<----Immuno-modulators

http://www.ccfa.org/info/treatment/biologics<---Remicade
 
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Starbelly

Starbelly

Remicade = miracle drug so far. Keep your fingers crossed, going for a few tests today to make sure I have turned the corner. If my hemoglobin is above 8.5 we will have succeeded.:ybiggrin:
 
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Skinsfan1229

Guest
I'm surprised your not getting shots if your hemoglobin ISNT above 8.5...has anyone brought this up to you?
 
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wcoyle

Guest
Remicade

I have been getting Remicade infusions for a while now. I also take imuran. I do notice a difference each remicade treatment. Overall each treatment works well but I do notice the symtoms come back before the next treatment. Because of the imuran I do have to go for monthly blood tests. I really don't care for the imuran too much since blood disorders run through my family. My mom has a blood disorder that has came very close to killing her a few times now and I read that Imuran has been known to cause it. Overall I am pleased with the Remicade treatments.
 
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Skinsfan1229

Guest
Most drugs have been known to kill people though. If you can tolerate Imuran right now, you pretty much have nothing to worry about. You might not notice the difference between treatments because if your disease isnt progressive enough then every 8 weeks would be fine. Maybe the remicade is taking out the TNF-a cell before it hits your digestive system....like its supposed to do.
 
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Skinsfan1229

Guest
Thats not from remicade...your taking an immuno-suppresent , or immuno-modulator along with Remicade arnt you Danika? like 6-mp, Imuran, Methotrexate, there are many others, like Cellcept.
 
A

Amanda895rw

Guest
I'm on Humira and it works wonderfully, virtually no symptoms :)
 
danika

danika

Skinsfan1229 said:
Thats not from remicade...your taking an immuno-suppresent , or immuno-modulator along with Remicade arnt you Danika? like 6-mp, Imuran, Methotrexate, there are many others, like Cellcept.
Click to expand...

Yeah I take 6mp and have been for about 2 years so I'm pretty careful about staying away from people who I know are sick, my DR told me to be especially careful after the infusions though... by the way I had my second one today, and I'll be having my third and hopefully last infusion in 4 weeks
 
Karen

Karen

FRIEND 4 1 & ALL
Location
United States of Amercia
Andrea ... My husband had his share of REMICADE TREATMENTS so just take along a book or a easy craft that you can do while you pass the time away & I will be praying for you that all goes well for you !!
 
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Skinsfan1229

Guest
I have to say the pill camera is excellent, dont knwo why someone that hasnt tried it cant talk down upon it. It actually porfororated my bowel because it got blocked and had to be dialated. Dont let someone that has no clue talk you out of it. Plus there is a dissolvable pill about the same size, and you swallow this first to see if it will get stuck, if it does, you dont take the pill camera(M2A study), if it does get stuck, its ok, it dissolves.

And about "pre-medding" before infusions, this IS for people that have had the treatment before, most doctors dont prescribe these medications before you've started and stopped, I dont believe many people get anitbodies 10-12 weeks, in fact I'd like to see that, maybe 1 percent.

AND there is no proven evidence that Remicade OR humira OR Cizmia causes ANY lymphomas, you can even read that on the CCFA website. I've posted about this before, top of the page, stickied.
 
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